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think im having flare

Discussion in 'Symptoms' started by jayne hall, Jan 30, 2016.

  1. jayne hall

    jayne hall Member

    mot felt good last few weeks

    my hands are swollen blistering bleeding and itchy feet hurt in the mornings have several new lumps on legs/feet/knees always exhausted even though i can get 8/9 hours sleeep always nodding off around 9 ish

    saw derm in dec told me to increase my plaqenil to 400mg and said he wants to see me agian end of jan
    had letter saying all clinics cancelled and no appointments until 31 march no good for me!
    i rang up hospital and was told undertaffed nhs cutbacks nothing they can do
    symptoms worsens since i saw him in dec and will run out of meds before march apppointment is the hospital only place who can prescribe plaqenil
    ive just had yet another bout of cystitis 4th in a year
    im worn out, marriage on rocks and dad diagnosed with alzheimers
    what can i do
  2. mark176

    mark176 Active Member

    Try making an inperson appearance at the hospital to get meds. That is normally much more effective than a phonecall and be persistent.
  3. mark176

    mark176 Active Member

    By the way GP can prescribe that drug, mine does. Its on repeat prescription. Originally i got it from lupus centre, but NHS is cheaper for me as i have a prepayment card.
  4. jayne hall

    jayne hall Member

    i didnt think the gp could prescribe plaqenil
  5. jillybean2003

    jillybean2003 Registered

    Hi I hope you feel better soon. I too am in the UK & have been on 400mg of plaquenil since 2003. Last October I was told by my pharmacist that it was no longer available here & I would have to take an alternative !
    Of course since thenI have had to BUT I am feeling so ill and heading headlong into a massive flare.
    Can you ladies please tell me if you are still able to get Plaquenil and if so how/where?
    By the way your GP can prescribe it........mine always has without any problem.
  6. mark176

    mark176 Active Member

    Hydroxychoroquine sulfate by zentiva is the replacement for plaquenil.

    Most pharmacies stock quinoric, which is similiar. However, i bullied my local boots pharmacy to specifically order zentiva in for me.
  7. debatat

    debatat Moderator

    Gp's can prescribe Plaquenil if asked to do so by a consultant in letter for a patient. Jayne your care is under the hospital at the moment still, you could try contacting a dermatology nurse for help or a dermatology secretary and explain the sitation. Either should be help with a prescription if all else fails try your gp.
  8. jayne hall

    jayne hall Member

    should i ry ringing the derm dep again? its just as they have cancelled by appomitment due to cutbacks i will run out and my lupus is bad at the moment my feet are killing me always bad in the mornings heels so swollen and myy legs and knee looked bruised and battered
    im always getting ill too does anyone else feel tired a lot?
  9. lazylegs

    lazylegs Moderator

    Call and let them know the situation. They should be able to guide you. In the event you don't get help try your GP.

    Tiredness is a common complaint for people with Lupus. Getting the disease under control will help.
    Since you are still having such difficulties you should speak with your doctor about a possible adjustment to your medications.

    Take care,
  10. jayne hall

    jayne hall Member

    the gp was totally useless said there not allowed to prescibe me this medicine
    i feel pretty ill agian got avirus now chest infection and cold and im so run down i have more lupus bumps come up on my legs and feet/ankles im extremly sttressed
  11. mark176

    mark176 Active Member

    This is what I would do
    1. Try a different doctor at same surgery or move GP
    2. Use 111 service to get an out of hours GP service and use that I got blood pressure meds that way.
    3. Go up in person to hospital and explain situation
    4. failing that you could try A and E when you are virtually out of pills. Far from ideal and not really the best way forward.
    5. Last option is you could try to get a prescription privately, from a private rheumatologist. Not ideal either as its unfair to pay when we already pay for NHS through NI.

    I'm hoping that you get sorted.

    Kind regards
  12. jayne hall

    jayne hall Member

    i cant afford private i shall keep ringing the hospital
  13. susane

    susane Registered

    I am so sorry for all you are going through, and just trying to get so me meds. There must be someone out there to help you.

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